I'm getting this issue out a bit early as I don't think I will be
able to work on it later this weekend. As I speak my Mom has
slipped into a comatose state preparing for death. She had her
surge of energy over the last two days and now she is not
responding. So far her respirations are not labored and it
seems she is breathing easier than she has in days.

The family has been gathered for a week almost and no one is
ready to leave with the thought that they will have to turn
around and come right back. Though this time is extremely sad,
we have had some great fun since we are all punch drunk. We
have been taking shifts at night sitting up with Mama. She has
been very restless and the Hospice nurse says that is called
"terminal restlessness". She will take her oxygen off
and she really needs it now.

It has been hard on my husband, Nick as there are so many
people around. He can't deal with so many for very long. He
knows Mama is dying but he can't grasp why we want to stay with
her so much. Gosh how I hate dementia of any kind!!

I know y'all are probably reading this and wondering
"Why is Jamie doing The Ribbon when she is handling
this?". Well the answer is that it helps my mind focus and
it is a way of touching my friends and acquaintances and feeling
the kindness and love and prayers that y'all have sent out to
me. They have all been noticed and felt. I've been so touched
and blessed.

Sleepless in Seattle, Baltimore, Rochester... Why Mamma Doesn't Sleep

by Mary C. Fridley RN, BC

The number one reason for institutional placement of someone with
Alzheimer's disease is nighttime wakefulness. If you're living
with a loved one who has Alzheimer's disease sleep may be a
distant memory. Here's a familiar scenario: it's 2am and your
loved one is awake, ready for the day, and no amount of talking
on your part is going to get her back to bed.

For your loved one with Alzheimer's Disease time has no
meaning. Yesterday is the same as today and 2am is the same
as 2pm. Now add that to normal changes occurring with age and
you have a double whammy! Even though your loved one has
dementia she will still experience normal changes that effect
quality of sleep just like you and me.

The need for an average7 to 8 hours of sleep a night doesn't
change as we get older. But sleep becomes more fragmented, time
spent in deep sleep is shorter, and it's not uncommon for older
adults to nap during the day to make up for nighttime
depravation. For someone with Alzheimer's disease sleep is even
more elusive due to confusion and disorientation and caregiver
concerns about daytime napping. However, there are some
things you can do to help promote better sleep.

Provide structured activities during the day that are both
physically and mentally stimulating. A short nap (about an
hour) right after lunch can also be helpful. Contrary to
popular opinion an early nap will not cause your loved one to be
more wakeful at night. Exhaustion from sleep depravation is
more problematic and may contribute to 'sundowning', the evening
agitation so commonly seen in Alzheimer's disease.

Avoid chocolate, spicy or gas producing foods, caffeinated
beverages, and stimulating activities in the late afternoon and
evening. Maintain a sleep routine for your loved one and be
consistent about the time to go to bed. Put a large faced-clock
in the bedroom along with a note about what time to wake up.

Be sure there is adequate lighting and a clear path to the
bathroom. Decreased bladder capacity is normal with aging and
many times wakefulness is caused by the need to urinate and
agitation from the inability to relieve the urge. When your
loved one wakens, don't make a big deal about it. Assist her to
the bathroom and calmly orient her to time. Encourage her to go
back to bed but don't force the issue, it may only cause more
problems. If she rummages in her room, and it's not harmful,
allow the behavior to be.

Nap when your loved one naps. It's easy to fall
into the routine of doing chores while she sleeps, but your sleep
needs must also be met. The chores will still be there when you
wake up and with both of you refreshed they can be done together.
If she's taking a cognitive enhancer like Aricept, Exelon, or
Reminyl you're most likely giving it in the evening. In some
people these medications can have a stimulating effect. So, if
your loved one has trouble sleeping, try giving it in the
morning.

Medication is also available for nighttime wakefulness that
is out of control or becoming detrimental to your health. Don't
be afraid to talk to the doctor about it. Just be aware that
sleep inducing medicines have side effects so additional safety
measures, like preventing injury from falling, should be
applied. Always start with the lowest dose and increase as
recommended by the prescribing practitioner.

If nothing works, it may be time to consider alternative
placement. Assisted living facilities and nursing homes are
equipped to manage this behavior and most do a good job.
Research the facilities through your local Area Agency on Aging,
by talking to family members of residents, and unannounced visits
to get as much information as you can before making a decision.
Don't think of placement as a personal failure instead think of
it as another caregiving experience on the journey through
Alzheimer's disease.

God Bless.

Mary C. Fridley RN, C is a Registered Nurse board certified in
gerontology with more than twenty years of experience in the
geriatric health field. She is a writer of advice columns and
articles for caregivers as well as a public speaker. Mary will be
glad to answer any questions you have and can be reached at P.O.
Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.

In Passing: Those We Must Remember

Dear Jamie and Karen, and those of you who have been there since the beginning.

My dear sweet Mother passed away on February 7th.

Please accept my gratitude for the compassion "The Gathering
Place" has given me during the last eight and a half years
of my Mother's life.

Your generosity of spirit provided me with the support,
confidence and strength to be attentive to my Mother, right up to
her last breath.

My biggest fear was, when do you know, "enough is
enough?" My Mother decided that when she stopped eating,
five day's prior to her death. It was terribly difficult and
emotionally draining as I wanted to keep her. Hospice was
called in and they gave me the direction and strength to remain
calm and attentive. I will be forever grateful. My Mother and I
were alone for a little over an hour before her final journey
home. An hour I will never forget. I softly, played her favorite
song, "Ave Maria," in the background as I gently
stroked her face and told her over and over, how much I loved
her. One month later, I miss her so much, yet she will remain
in my heart, forever!

Please
join us in sending your deepest sympathies to Charlene and her
family. Our thoughts and prayers are being sent.

Clinical Trials Web Program

The Oregon Center for Applied Science (ORCAS) seeks people concerned
about an aging loved one with memory problems to test the
effectiveness of a new educational Web program. The Web program,
supported by the National Institute on Aging,
offers strategies for dealing with common problems, balancing
home and work demands, coping with stress, and more.

Volunteers must sign up for the research study by MARCH 25 and
will receive $50 for participation. Study participants will be
asked to use the Web site and complete 2 on-line surveys (30 days
apart).

Go to http://www.agingfamily.org for more information or to sign
up, or call 1-800-934-0626.

Please pass this information along to others who may be
interested.

Thank you!

Sincerely,

The Staff of the Alzheimer's Disease Education and Referral Center
a service of the National Institute on Aging
National Institutes of Health
U.S. Department of Health and Human Services

Little Girl Lost

Little girl lost can I help you
Can I help you find your way?
Little girl lost can I help you
Won't you please decide to stay?

Little girl lost can I touch you
Can I wipe away your tears?
Little girl lost can I hold you
Can I take away your fears?

Little girl lost do you know me
Do you remember who I am?
Little girl lost can you trust me
I wonder if you can?

Little girl lost don't be frightened
I know you've lost your way
Little girl lost please don't leave yet
Oh won't you please decide to stay?

Little girl lost I know you're tired
For your journey's been too long
Little girl lost I know that much too soon
I will look for you but you'll be gone.

Little girl lost you look so happy
Is that a smile I see upon your face?
Little girl lost could you be trying to tell me
You've finally found your peaceful place?

Little girl lost as I look into your eyes
Which are no longer filled with fear
Little girl lost my heart longs to keep you
For I need to always have you near!

Little girl lost I must be happy
You have finally found your way
Little girl lost I must be so very thankful
That God let you leave heaven for even a brief stay.

Help Study the Impact of Alzheimer's on Children and Grandchildren

Alzheimer's affects not only the patient, but the entire family. What are the
challenges and joys that they face? Dr. Sharon Hamill, a
developmental psychologist from Cal State San Marcos, has
received a grant from the National Institute on Aging to study
how Alzheimer's impacts Sandwich Generation families — the
adult children and grandchildren of Alzheimer's patients. We
are looking for Mexican-American or white adult children of
Alzheimer's patients; these adult children are married and have
at least one 14-18 year-old teenager in the home. The Alzheimer's
patient does not have to be living with the family. Families who
complete a 30 minute telephone interview will receive $15 for
their participation and a copy of the study's findings. If you
or someone you know qualifies, please call 760-750-3684 or email
us at care4ad@csusm.edu. Please help us to help families coping
with this devastating disease.

I've been wanting to write and let you know I've
been thinking about you, and with the new Ribbon today, it seemed
like a good time. I am so sorry you have been going through such
a rough time. I hope you know my thoughts are with you, I admire
you so much for all you do.

We have just been through the issues of when is
enough again, with the worsening and passing of Marge's mom,
Dorothy. I know that was the hardest part for Marge, just letting
nature and God take charge. There was really nothing anyone could
say to make her choices easier. We did remind her, though, to
think what she would want if she were in her Mom's position. This
she was sure about. She also called hospice, but her mom only
lived a few weeks after they became involved. There is never a
"good" answer to these decisions, like Kev told me, you
just have to make the best decision you can with the information
you have at this time. I'm so sorry your husband cannot be more
supportive, you really need him now, but as you said, he is
probably offering all her can with what he is going through.

I won't take up too much of your time, I just wanted
you to know my heart goes out to you, and I'm sending a long
distance hug to one of the most special people we have ever met.
If you ever need an ear, I've got two!! Take care, Debbie.

Remember even though the days may still be cool where you are,
Spring begins on March 20th. Hooray!!